My grandboy was born with gastroschitis on 8/29/13. He was not able to tolerate any other type of formula, and his mother had a milk protein allergy, so was put on Neocate. He was also given protonix for reflux. He is fed through a J tube. He tolerated the formula well, but has always had horrible smelling movements that were extremely runny. He has not put on weight for quite sometime. Due to a move recently, we had to change hospitals. As A new patient, the hospital did some routine tests, and found that his Vitamin D, Calcium, Phosphorus, and potassium levels were critically low. Basically he was starving. We were following doctors orders on feeding amounts, etc., and had no idea!!! After much research, the endocrinology team found a study being done on children who have experienced absorption problems while on Neocate. The team got his levels up to normal, changes him to an alternative formula, and he is now holding steady levels. Due to the absorption issue, he has developed Ricketts, and experienced NUMEROUS fractures, even though he is not mobile. During the time he was on the Neocate, looking back, he had many times when he experienced what seemed to be cramping, twitches, horrible diaper rashes, and periods of unexplained irritability. He has a trach so does not speak, but he often put his fingers in his mouth, to the point of gagging and vomiting. It took me a long time to realize he was refluxing, and was trying to get to the burning sensation.
There have only been 19 (counting my GB) documented cases of absorption problems while on Neocate. There is currently a research study being done to see if there are more cases, and the level of intensity of the effects.
Please, if your child is taking this formula, make sure that their enzyme levels (vitamins) are monitored regularly. My little GB has sustained almost 20 fractures that we didn't know about because of the brittle bones due to this formula!
